Ten Reasons You Need Visitors to help with your Workload during Covid.

1.) It helps the already overworked staff.

Visitors can get ice water, ice chips, warm blankets, toast, snacks and other things.

I know that hospital staff are overworked during Covid. Work loads are reduced when visitors get these things.

I know that some visitors are more work than any thing else.

When Mom was in the Rehab hospital, there was a family who was told they couldn’t visit, because too many things went missing (including medication) when they were there.

But… the trustworthy visitors can save you time, and energy, by getting things when the patient needs them.

I still remember the passcode to the door of the kitchenette when Mom was in the main hospital, before she went to rehab. I didn’t give it to other families, but I did get things like toast, boost, and puddings for Mom. Because she wasn’t eating, we were encouraged to offer her food several times a day.

My getting her things made their workload lighter several times a day.

2.) Happier patients are healthier patients.

A hospital room can end up feeling like a prison, especially during days without visitors.

Mood and attitude affects health. I know this from experience, because I’ve been sick all my life.

I clearly remember as a young child figuring out that focusing on my pain and illness only made it worse, and ignoring it, allowed me to play with my brother for longer periods of time. (You can read the blog post “The Week Before I Went to the ICU” for more information).

3.) Happier patients can decrease the length of the hospital stay.

When I had surgery as a child, they expected me to stay in the hospital much longer than the 28 days I did, after surgery. I believe the difference, is my mother, although pregnant with my brother at the time, had only one child outside the whom. She was able to stay at the hospital 24 hours a day, sleeping in the bed beside mine.

Originally she slept on an air mattress beside my hospital bed, but during the first night, when my mother was pumping up her air mattress for the 2nd time, a nurse offered her a hospital bed, and tied the two beds together. (If you are that nurse, and are reading this – thank you).

4.) A positive mood, makes a more compliant patient and a less grumpy patient.

5.) A visitor can sometimes give a more complete story, than a very sick and confused patient. This aids in diagnosis, treatment and compliance.

6.) Staff can not be with patients 24 hours a day. Visitors can.

7.) When the patient is discharged, the family will need to know what happened in the hospital, and how to take care of the patient when they are at home. They can not do that if they were not there and do not know what happened.

8.) When the patient goes to their family doctor, a specialist appointment or returns for another hospital stay, the visitor can tell the story of the hospital stay.

My mother does not remember what happened when she was in the hospital. She has no memory of that entire year, of many of the acquaintances she had before, of many family events and many other things. Her normal pressure hydrocephalus took a lot of those memories away.

I remember, because I’m was her caregiver.

9.) Adequate treatment partly depends of an accurate storey.

When I take Mom to emergency and hospital appointments now I am not allowed to go in. She gets inadequate treatment, because she doesn’t remember her own medical storey, and I’m left trying to explain it to the triage nurse before she she even sees the doctor. I can’t anticipate every question the doctor will have and there isn’t any privacy outside emergency room doors.

Depending on how she’s feeling that day, she doesn’t always tell what she does know accurately.

It is not fair to deprive her of a full and complete medical exam.

10.) Recovery depends on a will to live.

I know when I was in the ICU, the hospital staff worked hard to make me live, including putting me on a ventilator, and countless other machines, as well as using the crash cart, jumping on top of me and doing stuff to save my life when I crashed on Christmas day. (My mother was surprised at how quickly “30 people where there” and how “that one man jumped on your chest”).

I also know I was fighting to live with all of my being. I fought so hard to wake up, to live, and get healthy again. I knew I was dying. It’s so hard to explain, but I know if I had wanted to choose to die, I could have.

If when faced with the choice to keep fighting or just let death take over, the patient is wondering where they’re family is, death would be an easier choice to make. Certainly it would be much less work.

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Note #1:

If you are confused: I was Mom’s caregiver when she had Normal Pressure Hydrocephalus, and a few years later when she recovered enough to take care of herself, I got sick and went to the ICU for an allergy I didn’t know I had. When I was discharged she became my caregiver. When I recovered enough to take care of myself, my father was diagnosed with a terminal illness, and my mother and I are his caregivers now. The lives of caregivers and patients can overlap, and roles can dramatically switch.

My mother and I both might be able to take care of ourselves and are currently caregivers for Dad, but neither of us are fully recovered. Hopefully we will be in the future.

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Note #2:

I know that having visitors during Covid is complicated, but it’s very important, and I implore you to find a way to allow at least one visitor per patient during this pandemic.

It will help your patients and your staff in so many ways, especially, chidlren, teens, seniors, the critically ill, and those with cognitive issues.

I know you will have to screen visitors, because bad visitors can make things worse for everybody.

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Thank you for reading this. Please share it however you want. You can retweet, or like the tweet you read this in, share it on your other social media platforms, or follow this blog.

I will try to post something written by me or a guest blogger every Friday (which I have no realized that for some of you is Saturday, because my Friday night is some people’s Saturday mornings).

On a personal note, my life has become very stressful, and small things like getting dressed (when during covid I have nowhere to go), and doing anything more than watching streaming services when somebody doesn’t need me, is becoming harder and harder.

If you are reading this an are helped by this, please let me know, by commenting, retweeting or sharing this. I need the encouragement. If you have any idea how to get out of this sadness, let me know, even if it’s just a cute video, or useful advice.

Thank you.

Tide Pod Challenge and Covid19.

Things have changed in the world because of Covid19. Entire countries have shut down, some people have taken great precautions and some people have not.

When I was in the ICU, the Tide Pod Challenge was popular. I overheard some ICU nurses discussing the challenge, and questioning why people didn’t take warnings about not consuming poison seriously.

Today the danger is different, but the people’s reaction to it isn’t. Many people are taking precautions, by wearing masks, washing their hands and staying at home. Many other people are refusing to, protesting new pandemic rules, and ignoring all sensible advice about not getting covid.

The cause of the danger is different, but the response is the same: some people are completely disregarding medical advice.

The question is the same: Why don’t people listen to medical professionals.

The answer is also the same: People don’t understand what is like to be that sick. They think it is the same as being sick with the flu.

For most people, the sickest they’ve been is having a bad cold or stomach flu. They’ve never been in the hospital and they never had a serious or life threatening medical condition.

They think the most pain they can ever be in is child birth, with painkillers.

They haven’t been in so much pain, that all they can see is a black void of nothingness. They haven’t been taught how to embrace the pain, and go through it, because fighting it just makes it worse.

They haven’t had to work to open their eyes when visitors come, but found that it took more effort than anything else they had ever done before. They haven’t tried desperately to get untied from a bed, so they could escape the nightmare of sedation.

They don’t understand, and likely never will.

They are more likely to think of a violent stomach flu, in which you can’t vomit anymore, because you’re stomach is empty, but still you’re stomach tries to throw up nothing, when they think of being very sick, than what I described above.

If they were told, “wash your hands, wear a mask, and stay at home if you can, or you will have a violent stomach flu, that will go on for days, maybe weeks”, they would be more be likely to wash their hands, wear a mask or stay at home, because to them, being on a ventilator in the ICU is so foreign it might as well be mars.

It’s just incomprehensible and completely beyond any comparison to any place they’ve ever been to or anything they’ve been through before.

With a threat that is so unknown, rarely talked about, misrepresented in the media, and rarely seen in person, most people just truly don’t understand the risk.

Like the teens consuming Tide Pods they think that getting sick, is at most a trip to the hospital, watching TV all day, getting meals served at meal time, sleeping in an uncomfortable bed, and then resuming normal activities in a few weeks.

They don’t know that the hospital stay and delirium can cause PTSD, that muscle mass severely decreases in the ICU, or that the recovery process lasts months, if not years.

They can’t understand, because they have no basis, in which to understand.

Most fictional characters who’ve been in the ICU, aren’t that sick. In one show I saw, a main character decided he had enough of being in the hospital, pulled out all of this wires, and unhooked all of his machines in one motion, before getting up and walking out of the hospital, with his nurse following behind saying “you can’t go.” He didn’t even need to worry about a hospital gown that didn’t quite close in the back, because his fit perfectly.

Although people understand fiction isn’t real, if it’s the only source of information you have about a place you’ve never been, your imagination of that place, will be close to the fiction you watch and read.

We who know what it is like to be patients, staff in the ICU and visitors in the ICU, need to tell them what the ICU is like. We need to speak up and say “hey, as sick as you’ve ever been, this is so much more than that.”

I truly believe that most people, would not want themselves or their loved ones, to be in the ICU if they knew what it is like. It’s not like the maternity ward, that most people have visited, or like the emergency ward that many people have waited hours in to see a doctor. It’s for the very sickest of people.

If I told people “what ever you do, never go beyond that wall over there. Don’t go through that door, ever.”, but I never told them what was behind the wall. Even if there were dragons, volcanoes and hurricanes behind that wall, few people care that I was telling them never to go through that door and behind that wall, especially if they didn’t know me, and most especially if other’s, they did know, told them that harmless puppies were behind that wall.

Add discomfort like isolation, and mask wearing in the room they were suppose to be in, and many people would completely disregard the warning.

Other’s would loudly proclaim me to be stupid, or even destructive.

This is why misrepresentation of the ICU is wrong, and it is why for those of us who know staying silent about the ICU is wrong.

I’m telling my story as much as I can. I’m yelling as loud as I can but I need you to yell too, and maybe we’ll get people believing that getting Covid19 can be worse than following public health advice about washing hands, wearing masks and social distancing.

Maybe we can stop this together. Will you help me?

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Share your storey. Tell it to as many people as you can. Write it in a blog, or a letter to the editor, or in any other way you can.

You can share this blog post by tweeting, retweeting it and liking it on twitter, and sharing it on your other social media platforms.

If you like this post and want to read more like them, you can follow me on twitter, or on this blog itself.

Thank you for reading.

Sick Today

I know I said I’d write blog posts every Friday. I’m sorry I can’t today.

I woke up last night because of diareaha, went back to bed, woke up mid morning, went about my very busy day and somewhat strange day, and then started feeling sick again when it got dark.

Why does illness get worse at night when people need sleep, instead of the day when there’s no sleep to interrupt?

I’ve been trying to post, but editing and writing posts is being prevented by illness.

See you next Friday.

P.S. I know I spelled diareah wrong. I don’t care enough right now to look it up and correct it. It seems like a lot of work. Maybe later. 😉

Sick Today

I know I said I’d write blog posts every Friday. I’m sorry I can’t today.

I woke up last night because of diareaha, went back to bed, woke up mid morning, went about my very busy day and somewhat strange day, and then started feeling sick again when it got dark.

Why does illness get worse at night when people need sleep, instead of the day when there’s no sleep to interrupt?

I’ve been trying to post, but editing and writing posts is being prevented by illness.

See you next Friday.

P.S. I know I spelled diareah wrong. I don’t care enough right now to look it up and correct it. It seems like a lot of work. Maybe later. 😉

Children, Doctors and Consent

As I’ve said before, my time in the ICU was not my only time in the hospital. I was born sick and was a sick child, who had many surgeries.

This one is not going to be about the ICU. It’s going to be about the time I spent in the hospital after my major surgery when I was a toddler.

“Rain rain go away, come again another day”, I sang out to a doctor as I slid under my bed.

He commanded me to come out, but I refused.

He wasn’t even my doctor. I didn’t even know him, but he wanted to learn from me, and I refused. I would not come out and my mother refused to make me.

Instead she responded by saying “she may not be 3 yet, but she has a right to say ‘no’”, and told him to go.

As a hospital staff member, you might be reading this thinking I was a brat. As my mother was telling me this, she laughed thinking how cute I was.

I’m not a brat, and I never was a brat.

Before you judge a sick child’s brattiness, consider what it is like to be a sick child, and what you want that child (all children), to know about their own bodies, an boundary’s.

I was almost three, small for my age, and in my own way saying “no, I don’t want you to touch me right there, right now”, and I had a perfect right to do so.

I understood I was sick, and that I had been sick all my life. At almost three, I was a medical veteran, who had more medical procedures, surgeries, medications, doctor’s visits, sick sleepless nights, and pain than most adults have ever had in their lifetimes.

At that time I was saying to a stranger “no, not now, you can not touch me”.

My mother was making people respect my right to say “no”, and to have control over my own body. My body wasn’t a learning tool for some resident who wasn’t even part of my surgery team to look at, prod and learn from. I wasn’t a textbook, or stethoscope. I was a developing child, whose mother recognized was learning about how to be a person and eventually an adult from that moment. She was allowing me the privilege of saying “no, you can’t touch me”. And she was absolutely right.

It doesn’t matter than she was inconveniencing and even angering medical staff. They are adults. They’ve already learned their bodies were their own, and about consent. They weren’t being asked to be touched, and examined and have medical gowns pulled away to expose bare skin. They were not the ones in their formative years.

My mother was teaching me what consent was and that saying “no” to being touched is ok.

Maybe thinking about consent with a toddler is, uncomfortable to think about, but sick toddlers grow up to be adults, and if those children have learned as toddlers that they don’t have a right to say “no”, and that they can be touched when ever and where ever a stranger wants to touch them, and that they are “brats”, if they don’t concent, how are they going to apply that when they are adults?

If your a child who has already been told your consent doesn’t matter, how will you respond to a pedophile?

If you’re a teen who has learned as child that you can’t say “no”, how is that going to affect sexual exploration?

If you are an adult, who has already learned, that you don’t have control over your own body, how is that going to affect your ability to distinguish abuse from normal adult relationships?

Children are growing, learning and understanding the world around them. They are not little science experiments, or textbooks. They are not work places.

They are people, who deserve the right to grow up, in control of their own bodies. Do not break their spirits in an attempt to fix their bodies, or worse, learn from their bodies.

If you work with children, in a hospital or medical setting, remember that. Please see your child patients as developing and learning from everything you do, and ask yourself “what you do want them to learn from you?”.

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You can follow me in Twitter, where I announce each post, you can ask me to mention you in my tweets announcing each post, you can follow me through this blog, or you can check back every Friday to see what I’ve posted.

I haven’t posted regularly before, but my posts will appear in Friday’s from now on.

Crying Alone in a Quite Basement:

I sat alone in a quite basement, the sound of Dad’s oxygen machine, rhythmically going in and out, in and out, as I cried, and tried to stuff my feelings beneath the surface.

It didn’t work very well.

In the medical field the roles don’t often converge. Caregivers don’t often become patients, and patients don’t often become hospital staff.

In my home, the roles converge so often, that I have been both caregiver and patient several times.

Both are hard.

It started when I was born, a very sick baby, that was diagnosed as “failure to thrive”, which means “I don’t know what’s wrong with her, and I don’t care. Take her home, so it won’t be my problem any more.”

My mother, thankfully wouldn’t accept that diagnosis, and took me to a series of doctors until I was diagnosed, and eventually treated with surgery.

The daughter whose live a mother saved, grew up to save the mother’s live.

I noticed something was terribly wrong with my mother, when she got lost coming home from the store, which is only 2 blocks away.

Thus began the same desperate search for a doctor to diagnose Mom. By the time she was diagnosed, a year had gone by and she couldn’t get out of bed, role over by herself, or have a conversation beyond bathroom needs.

That winter was a cold winter, but both Mom and I missed it. Homecare people came and went, complaining about the cold as they did, but neither Mom or I noticed it, because she was consumed with illness and I was consumed with getting her better.

Dad, who traveled for work, came by every two weeks for a weekend. Sometimes he’d stay longer and sometimes he wouldn’t.

In the end, he took a leave of absence, and stayed home all of the time.

We finally got a diagnosis and surgery, followed by time in rehab to learn how to walk again.

She was still recovering when she got home.

Just as she got almost completely recovered, I had an allergic reaction to something I didn’t know I was allergic to, and ended up in the ICU. In the ICU I got sepsis and pneumonia and crashed twice. Once on Christmas Day.

It’s been almost 2 and a half years and I still am not fully recovered.

A month after I got home from the hospital, Dad got sick, and ended up in the hospital. Thus began a two year battle with his health.

He is now dying.

There is a hospital bed, in the living room. It mostly likely will be the bed he dies in. There is an exercise bike in the office, making it very hard to write. Right now, I’m on my bedroom floor, surrounded by both clean clothes that haven’t been folded yet and dirty clothes that haven’t been washed yet.

The basement is a huge storage room, where everything that can’t fit up here anymore has ended up piled up. It used to be a furnished basement, but as our family gets mired more deeply into Dad’s illness, the basement gets more and more stuff, to make way for new things like hospital beds, and bath chairs, and medical supplies upstairs.

Just as our house is in disarray, I feel like my life is in disarray. Because we are in the middle of a pandemic, Dad’s care has fallen on us, and us alone. Family can’t come over, although slowly we are breaking the rules more and more, and maybe they will end up completely broken. I don’t know.

I haven’t had a chance to emotionally heal from any of this. One thing happens, so suddenly that the emotional healing from the last thing hasn’t been completed. Wound after wound piles onto my being, creating guilt that I am inside yelling “what about me”, as my father lays dying in the living room.

That is what live in like for your patients and their families.

Before they even got to the ICU they may have had problems caused by prolonged illnesses, or things completely unrelated to medicine.

And then the ICU brings with it all the things I’ve described in this blog under the “chapters” tab and the other entries. For the family it brings fear of death and the unknown.

It can be pain added to already broken people.

If Dad ends up in palliative care or in the ICU, I will already be broken before he gets there, because right now I am very broken. I cried much of yesterday, and today seems like another day of crying. My eyes are swollen, I haven’t bathed in several days, the house is a mess, and I’ve been displaced in my own house. I don’t know when it will ever end, because even when it does end with Dad’s eventual death, my pain won’t end. It will only get worse.

Please see your patients and their families as potentially broken people? Don’t judge their actions as people who are completely in control of their lives, actions and emotions?

For you, each day in the ICU is a completely normal day. For your patients and their families it could be the worst day of their lives.

If they need things repeated, if they seem in a fog, if they snap at you, if they seem just “off”, it is because they are under stress. They could even be in shock.

Top 10 Reasons you don’t want to go to the ICU because of covid19.

Covid19. The virus that should have caused us all to stay home, and practice social distancing.

But let’s back up a few years….

When I was in the ICU, a dangerous internet challenge went viral. I heard people discussing it, and asking each other “why would anybody do that?”

If I hadn’t been on a ventilator at the time, I could have answered “because people don’t know what it is like to be that sick”.

Really, people think “I’ll get time off, maybe I’ll spend some time in the hospital and then it will all be over.”

WRONG! That idea is absolutely wrong.

You don’t want to be in the ICU for any reason.

Movies, TV, books… They all show a fictionalized version of the ICU, where patients are sick, they get better before leaving the ICU, and then they go on with their lives, as if being in the ICU is as life changing as getting a new car.

It’s more.

If you have never been in the ICU, you need to know, at this time, why you don’t want to be in the ICU, or cause anybody else to be in the ICU.

1.) Almost dying, is painful. It hurts. I thought somebody was trying to kill me. I didn’t know where I was, or why I was there.

And

Following that is the emotional pain, of wondering why you lived, and other’s in your situation didn’t.

2.) To be on a ventilator, you need to be intubated by having a tube shoved down your throat with enough force to reach your lungs. It scrapes raw wounds all the way down your esophagus, and causes pain that lasts about 6 months. Your throat is more sore than it ever was before, and it gets itchy as it heals. Very very itchy, and you can not scratch it. If you had any kind of gerd or acid reflex before being intubated, that acid also burns like like battery acid being poured on an already festering wound. That also lasts for about 6 months.

3.) A feeding tube, is shoved down your nose with the same force, causing the inside of your nose to also be painful and itchy. Note: They don’t give you painkillers for this either.

4.) You lose your sense of self. I couldn’t decide if I was male or female. I actually thought I was both. I also thought I was so evil, they put me in an induced coma to protect the public from me.

5.) Delirium is your worst horror movie come to life. You see coffins being rolled passed your bed, and people who aren’t real, but to you they are and the only reason they are there is to hurt you.

6.) Sepsis, a blood infection, is being seen in covid19 patients. Sepsis if not caught early enough, can cause brain damage, limb amputation and death. (See the uk sepsis trust website for more information).

7.) Recovering is not done in the ICU. It takes years to recover.

The ICU is there to get you to the point that you are not dying anymore. It is not there to return you to base point.

It took me more than 2 years to fully recover, and I’m still not recovered. There are still things that I used to be able to do that I can’t do now.

I’m not sure I’ll ever get to where I was before. I can’t walk around the block without wheezing. I can’t remember everything I knew before. I sleep more than I did before.

My right arm is still much weaker than my left. It tires much faster than my left, and it gets very painful when I over use it. Unfortunately I’m right handed.

8.) You won’t have the energy to leave your home after you get home from the ICU.

I had so little energy I wanted to outsource going to the bathroom.

I was so sick I didn’t have the energy to go to my doctor, for months after being in the ICU.

When I finally went I had to take my mother, because I didn’t remember many things.

9.) The ICU leaves many people with PTSD.

I have PTSD, from the ICU.

10.) The expense. I paid nothing, because I live in a country with socialized medicine.

If you aren’t so lucky and you get covid19, you will have a hospital bill that’s so high, you might have to sell your house, go into bankruptcy, or be in so much debt you’ll never get out.

The ICU is the most expensive hospital bed there is, because of 1 to 1 nursing, expensive equipment, and highly educated doctors.

I’ve outlined why you personally don’t want to go to the ICU. It’s also why you don’t want to cause anybody else to go to the ICU.

Practice Social Distancing.

Don’t go out until you need to.

Don’t visit without people who are not in your household.

I know it’s hard, but it is so much easier than the alternative: getting Covid19, or giving it to someone else.

If you want to know more about my experience in the ICU, you can read all about it in this blog.

Please share this, like it on twitter, tweet or retweet it or like it on this blog? Please tell your friends and family? You can also follow this blog if you like.

People need to know how serious this is, and the risks they are taking when they don’t practice social distancing and stay at home.

If someone benefits from my pain in being in the ICU, it will be worth it. I don’t want my pain to be useless pain that helped nobody.

10 Things to tell ICU patient’s families to make an ICU stay easier.

In my last two posts, I talked about the 10 things that would make an ICU stay easier for patients, and 10 things not to do. (If you want to read those posts, click on “home”, and then scroll down.)

In this blog post, I’ll talk about 10 Things to tell patients families to make ICU stays easier.

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A stay in an ICU means that somebody is sick enough or been injured enough for the family and friends to be worried about death, or the future life of their family member.

The family and friends may be in shock or emotionally distraught.

Extra problems like parking might seem too hard to cope with.

For that reason, here are 10 things to tell ICU Visitors to make the stay easier for themselves and the patients.

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1.) Tell visitors where the waiting rooms are.

My mother drove in the ambulance with me, and my brother met her at the hospital doors.

They followed me and my stretcher right into the operating room, before someone told them “This is the OR, you can’t be here”, and gently lead them to a waiting room.

I’m thankful they weren’t just kicked out without anywhere to go.

2.) Tell visitors about parking.

The hospital I was in, has the most confusing parking system ever, with multiple entrances to the parking lot, and a complicated pay before you stay system.

Tell visitors, how the parking system works. If you can get daily, weekly or monthly passes, tell them they are available and where these passes are sold.

3.) Tell visitors about the cafeteria.

Tell them where it is, what the hours are, and who can go there (just staff, staff and visitors).

4.) Tell them to keep an ICU diary, to help their family in the ICU.

When I woke up from sedation, I had no memory of what happened and plenty of questions. I’ve seen tweets about ICU diaries. Tell the families, about this, and give them the option to keep a diary.

5.) Tell visitors to take pictures, but do not post them on the web.

My mother took many pictures of me while I was in the ICU. When I was able, I airdropped them from her phone to my phone. Sometimes when I’m feeling down I look at them. They comfort me because they remind me how far I have come.

6.) Tell visitors about ICU rounds.

What time are they? Can family go and listen? Can family ask questions?

7.) Tell family the ICU visiting hours, if there are any.

8.) Tell the family where they can get information on what the patient has.

Many families will have questions and will turn to the internet for help. Tell families, about good websites about the conditions the patient has. This will cut down on getting lies from the internet.

9.) If you are going to give a timeline of when a person gets better, make it realistic.

My father was told I would be recovered 3 months after discharge. It’s more than 2 years to fully recovered.

It was a disappointment to all of us, when 3 months came by and I was still very sick and week. If I was fully recovered, why was I still so week? Was that what the rest of my life would be like?

10.) Tell families about any support groups in the area or at the hospital.

If your hospital has an ICU support group, tell the families about it. Inform them how to register, and or become involved.

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Note: I realize during this Covid19 pandemic, the stress ICU and hospital staff are under might make these things harder to do.

Please take this a suggestions to help, and not finger pointing?

And again thank you for doing what you do.

Almost 10 Things not to do to make an ICU stay easier +1.

I’ve been debating doing this blog post, because it is more negative than the last.

This post and the last post started as one blog post, titled things I want ICU doctor’s to know, but eventually I cut all the negative out of the last blog post and titled it “10 Things that can make an ICU stay easier”. If you haven’t read it, it’s still here. Just go to Home, and then scroll down one post.

I know that working in the ICU must be stressful. I’ve been reading tweets of ICU staff for 2 years now, but…

Well here goes.

If you are still reading this, thank you.

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Almost 10 Things not to do to make an ICU stay easier +1.

1.) Don’t ask your patients to describe the day before they went to the ICU. They will not remember.

I went to the ICU during the coldest time of that year. Oddly enough the day before I went into the ICU, it was a nice warm winter day, that ranged between -10 and -15 Celsius.

By the time I woke up from sedation, the temperature plummeted into the -40’s Celsius. Cars wouldn’t start, nurses wore warmed blankets around their shoulders, and the ICU staff conversations revolved around proper winter clothing, cars starting, and scrapping snow and ice off windshields.

My parents couldn’t start either of their cars and therefore couldn’t visit for 2 days.

During those 2 days I was awake enough to be asked questions.

The ICU doctor asked me to describe the day before I went into the ICU.

I said it was a normal day.

He questioned further “anything unusual happen”.

“No”

“Were you feeling sick?”

“No”

“Any nausea or diareaha?”

“No”

The questions continued like this, until he left.

What he didn’t know was although I was telling the truth, from my perspective, it was extremely inaccurate.

Because I had no memory of the day before I went into the ICU, I thought it was a normal day with no memorable events. I also thought but did not say, that there was a severed human foot at the base of my bed where he stood.

It neither shocked or scared me. I just thought “so that’s where they keep amputated limbs”.

I didn’t know I vomited violently the night before, and was so week I couldn’t walk to my bed without assistance after vomiting.

This was all written out in detail in my diary, and my mother told me about it afterwards, but the doctor never found that out. I didn’t remember, I didn’t have any visitors to tell him any differently, and I was too sick to think of telling my parents to correct what I had said when they could visit.

A diagnosis was made with wrong information.

I used to think, that it didn’t matter what the story was, because doctor’s diagnosed using diagnostic tests. I thought doctor’s were just being snoopy when they asked questions like that. It wasn’t until I started reading the tweets of those of you I follow on twitter that I realized the patient history is used in making a diagnosis.

2.) Do not assume your patient doesn’t have delirium.

I may have been thinking amputated feet were kept at the bedside, but I didn’t mention it. I didn’t think there was anything out of the ordinary, about it. Why would I interrupt the doctor’s questions to ask whose foot that was?

I didn’t say anything when the coffin rolled by either. I assumed that a patient had died, and that’s how they took dead bodies out of the hospital.

3.) Be aware that delirium is a thing, and tell the ward the patient is going to afterwards that it is a possibility.

I wasn’t actually diagnosed with delirium or ICU psychosis. I was diagnosed with hallucinations after, asking a nurse if there were fire works on the ceiling or was I developing schizophrenia?

She explained that neither was the case. “Sometimes when a person swells up because of a allergic reaction like you did, their brain swells up too, causing hallucinations. Do you want me to ask a doctor for medication to make it go away?”

“No”, I said “I’ll just enjoy the light show and go to sleep”.

I didn’t sleep that night. Instead I had entire conversations with people who weren’t there, and saw babies crawling in the snow outside.

In the morning I was moved to a private room because I kept the other people in my first room awake all night by talking.

After being in the hospital for a few weeks the speech pathologist, very nicely leaned over to me, and said “I think you have ICU psychosis, but nobody in the ICU realized it because you are so smart and hid it so well. I just thought you should know that’s a thing.”

4.) Do not assume that delirium means your patients are completely wrong about everything?

I may have had delirium, but I knew the names of the medications I was taking, and I knew why I was taking them.

Has delirium ever caused anybody to know things they didn’t know before?

I was getting the proper medications in the ICU, but once I was transferred to the ward, the med student changed them.

When I asked for one particular drug that I can not live without, he told me nobody took that for anything.

Would I really be able to come up with the accurate name of a real drug, that I was taking just a few days before, because of hallucinations? (The delirium I wasn’t even officially diagnosed with).

5.) Do not lie to your patients. They won’t believe anything you say afterwards.

When I was in the ward after the ICU, a med student told me “I know everything there is to know about kidneys”, and then refused to contact my nephrologist or the community pharmacist who helped decide what medication I should take.

I knew that was a lie. If he knew everything there was to know about kidney’s he’d be a nephrologist, not a med student (who knows even less than a resident).

He lost all my respect and trust, with one lie. What he said didn’t matter to me at all after that.

6.) Do not let med students and residents work on patients who are critically ill.

After that the med student came in and told me what “the team” decided, and asked me questions “the team” wanted to know. He was always by himself.

He wasn’t educated enough to work with the critically ill. Having to talk to the doctor through an intermediary is the most garbled kind of communication ever. I didn’t have any trust in him after he lied, and I’m sure he didn’t translate my concerns or questions properly.

I should have been able to talk to the doctor myself, not use this intermediary that worked as well as a wonky walkie talkie.

7.) Do not insist that you know more about your patient’s long term health problems than your patient does.

I have been living with a variety of health problems since I was born. My first diagnosis was “failure to thrive” and imminent death.

Obviously I didn’t die, and as I grew older, my parents were given different and better diagnosises.

I may not know everything about every health problem, but I know about mine, my body, the medications I take, why I take them, and what tests need to be done when I am not feeling good.

Because this med student assumed I didn’t know any of that, he refused me medication I knew had to take, and he verbally bullied me, which leads me to #8.

8.) Do not bully your patients.

During one argument with him, I realized he could do anything. He could rape me right there in my private room if he wanted and I would not be believed, because he had all the power.

He had the power to say anything that would make him look good and me look bad. I was the one who just got out of the ICU a few days before and had documented “hallucinations”. I was the one who was “crazy”, and he was the supposedly sane, educated one.

It’s a terrible feeling to know you don’t have any power over your own health or body. I knew he was making mistakes, but he wouldn’t believe me that my kidney function could not be measured by a blood test, or that I was on some rare medication to keep my kidney function as high as possible.

I knew that if I didn’t get that medication soon, I would never get better and would just die there in the hospital from kidney failure.

9.) Do not consider your patients to be learning tools.

I am a person. I have my own life, my own thoughts, and my own emotions.

I have a family who loves me, and an important role of caregiver and at times care receiver in that family.

I have my own likes and dislikes.

My body might not work 100%, but I am 100% human.

I am not a stethoscope, MRI machine, or textbook. Unlike those things, when I break, I either die or suffer irreparable harm.

I am not a learning tool.

And as such, I should never have been treated like one when I was in the ward after the ICU.

I realize this is in the ward after the ICU and the ICU staff have no control over what happens after a patient is discharged from their ward, but I also realize I have control of this blog, and this is what I want to say.

I am a person. I am not a learning tool.

My experience after the ICU should never have disintegrated into arguments, a feeling of powerlessness, or the threat to sue that med student for everything he had, just so I could get the proper medication.

If he had seen me as a person, and not some talking learning tool, it might not have become that.

Please teach your students, that patients are people? It seems so obvious, and shouldn’t have to be said, but obviously some students don’t understand that.

I wish that a prerequisite to meds school was to actually have a chronic or long term health problem. That would make students empathetic and less likely to see their patients as living text books.

10.) Do not tell your patients to “Just Walk”.

I was so often told “just walk, you’ll leave the hospital faster if you walk”, but I wasn’t given any assistance in walking.

My balance problems and fear of falling were not addressed until 18 months later, when I finally saw a physiotherapist (one I asked to see).

Telling somebody to do something, they are afraid to do will cause even more harm because it makes the patient feel hopeless, helpless, judged, and hated.

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10 Things that will make an ICU stay easier:

Time…

It goes too fast when you’re having fun, like at an amusement park.

It goes to slowly when you’re not having fun, like at the dentist.

It becomes completely indiscernible, when you’re under sedation. My nephew and brother seemed like they were the same age.

It becomes untrackable when you’re deprived of any form of time tracking devises.

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Laying on your back, staring at the ceiling in a basement room without windows, makes time indiscernible. Combine that with delirium, illness that makes you so tired it’s hard to keep your eyes open, and ICU staff that come and go at odd hours, and the days just blend into each other.

When I wasn’t sedated, but still in the ICU I tried to keep track of time. As mentioned before I asked for paper and a pen as soon as I woke up from sedation. I tried to make a small calendar on one of those pieces of paper, and figured out the day by asking how long I had been there and when I went in there. When I thought the day changed, I marked it off on the calendar.

When I went to the ward (just the first bed that would take me), I continued with the calendar. The days were easier to follow, because the window allowed me to tell the difference between night and day.

But…

All this could have been helped, if people told me the time, and the day, or if there was a clock on my ceiling.

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The ICU is a very different place for patients than it is for staff. Being in a bed, with all those tubes and wires, and having to rely on others is different than standing beside the bed and being in control.

I remember trying to change my bed position to sit up a bit, and completely messing up the buttons on the bed. It wasn’t like a normal hospital bed. It was more like a waterbed. I wondered if a person needed a nurses degree to move the bed, and why it was so complicated.

I was rescued by a nurse that asked what I wanted to do. I whispered my reply because my voice was still very week.

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With that understanding in mind, I know that somethings just simply get overlooked because the experiences are so different.

I’ve made a list of things that can make life easier for your ICU patients.

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1.) Put a clock on the ceiling.

2.) Tell your patient what day it is and what time it is every time you see them. Say something like “Good Morning, it’s 10:00 am on Sunday, Jan 4”, or something like that.

3.) Tell your patients where they are. Include the name of the hospital and ward.

4.) Tell your patients why they are in the ICU.

I had no memory of going in.

I confirmed my parents storey by reading my diary entries for the days before I went into the ICU, because I had no memory. It triggered faint memories of the day before.

5.) Tell your patients who you are each and every time you see them.

If I ever knew who people were, I didn’t remember them by the time I saw them the next time. People did have name tags hanging around their necks, but they often hung so the name faced their shirts and not me. I remember one man, telling me something, but I had no idea who he was. I tried reaching out and turning his name tag around, but I just couldn’t reach my hand out to him.

In the back of my brain I knew touching him wasn’t appropriate, but I also desperately wanted to know his name, and position.

Because I couldn’t talk I couldn’t ask him.

He finally walked away without me ever knowing who he was, what his qualifications were, or even what he said. I was just to focused on the name tag to listen.

Note: Normally I wouldn’t have been so inappropriate to reach out to a stranger but all those meds, and my need to know who he was, changed the situation. I felt it was my only option.

6.) When you’re patient calls, answer.

After I woke up from sedation, but still couldn’t get out of bed, a nurse almost learned this the hard way.

He was sitting at the end of my bed doing paperwork when I called him. Instead of answering, he got up and walked away.

It was hard for me to call him because I was so weak. I kept calling because I had to use the bed pan.

Finally another nurse came to my bedside and asked what I wanted.

If that nurse hadn’t come at that time, my nurse would have had a big mess to clean up.

7.) Provide pain killers upon discharge from the ICU.

Having a tube stuffed down your throat with such force that it scapes the inside of your esophagus hurts and it leaves a lasting wound.

The pain in my throat was much more than the sore through you get from a cold. It was a raw wound all the way down, and it took about 6 months to completely heal. I thought the doctor used a drill to make me a new throat because my old one had clogged up.

To combat that I was offered cough candies. This was in the ward after the ICU, not the ICU. Cough candies do not help. That’s like offering a bandaid to a wound that needs stitches.

Painkillers, or throat spray or something I haven’t heard of is what’s needed.

The pain behind my nose where the feeding tube went in was also sore, but not as sore. It too took months to fully heal.

Make sure the ward the patient goes too, knows that the patient is in pain and cough candies are not good enough to stop the pain.

8.) Provide GURD medication.

The acid of acid reflex rubbing on a throat that has been damaged that way is agony.

Please prepare for this, and make GURD medication a normal part of treating somebody after they are extubated.

9.) Explain… everything

Explain the procedures you are going to do, and why you are doing them.

Explain the medicine you are giving and why you are giving them.

10.) If a patient is not compliant ask what the problem is.

After I was extubated I refused to eat or drink. Although my nurse implored me to I just wouldn’t do it.

I wasn’t being non-compliant just to be difficult and make the nurse have a bad day.

I wasn’t eating, because I was afraid to vomit.

When the doctor pulled out my feeding tube, he told me “Ok, don’t throw up, or we’ll have to do this all over again.”

I didn’t know I had been intubated, extubated and intubated again, because I threw up and aspirated before. I had no memory of that. I didn’t know I had pneumonia, or sepis after being intubated the first time. I didn’t even know why I was in the ICU.

What I did know, was I couldn’t vomit if I had nothing in my stomach to vomit.

Not eating seemed like the best option.

If the nurse had asked me, and then explained what happened, I might have eaten then.

In the end the nurse asked what I most wanted to eat, and then got that stuff for me from the cafeteria even though it was unhealthy.

It sat on my beside table for a while before I finally consented to eat it. I may have resisted the temptation in the beginning but not forever.

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To all the ICU staff: Thank you for doing what you do.

To all who are still reading this: Thank you for reading this blog.

If you like what you read, please share, like and retweet it on twitter, follow me on twitter or follow me on this blog.

In my next blog post I will give some things of what not to do, and in my blog post after that I will give some things of how to help visitors to the ICU.